We Beat Leukaemia: My family's journey with childhood cancer

By Melody Berthoud

My son Andrew was only three years old when he was diagnosed with Leukaemia. Now he’s a healthy, happy six-year-old. We Beat Leukemia is my honest account of chemo, childhood and being a mummy to cancer – written over 1235 days from diagnosis to remission.

I started writing daily posts to record the highs and lows, frustratio

• Language: English
• Publisher: We Beat Leukaemia
• Release date: Aug 12, 2016
• ISBN: 9781911079286

Book preview

Chapter 1

Diagnosis

Ev’ry parent’s thought

Not my son, my world, my child

I wish it were me.

Andrew was born in May 2009 in time for afternoon tea. It was a gorgeous summer’s day and the multi coloured tulips in our garden were in full bloom. My husband, Joseph, raced home to collect Clara, aged two. She arrived shyly in the hospital room and was introduced to her baby brother. Two years before, when I was pregnant with Clara, I left my deputy head role to become a stay at home mum. I thoroughly enjoyed the life of coffee mornings, play dates in the garden, toddler groups and classes which punctuated our week.

In May 2012 the tulips were in bloom again. Andrew celebrated his third birthday and Clara had already turned five. It was the summer of the 2012 London Olympics and we had won three sets of tickets in the ballot for basketball, hockey and volleyball. We decided to staycate that summer, rather than go abroad, and enjoy the buzz and atmosphere in London. Joseph and I started to make plans about my return to work. We decided I could go back to work regularly for two days a week so I was delighted to be offered a part time job as a primary consultant for a multi academy trust in London, starting in September 2012.

On my first day back at work, with butterflies in my stomach and new shoes on my feet, I got the train to Peckham Rye and felt such a sense of excitement, liberation and freedom from my days at home as ‘Mummy’. I walked past butcher shops with dead chickens hanging in their windows and revelled in the experience of going to different places, being with new colleagues and becoming Melody again.

One day when Clara was back at school, Andrew and I visited the London Transport Museum with friends. We had a lovely day out. We sat on the step in Covent Garden eating chocolate ice creams, the sun shining on our faces whilst watching an entertainer build up to his one and only unicycle trick. It was a lovely moment and I remember thinking how great life was. Everything was in balance.

Two weeks later however Andrew was not settled at preschool. He was very tired, and on the days when I took him he refused to scoot, so I pulled him all the way. I would pre-empt his end of pre-school tiredness by picking him up with the pushchair and a sandwich, which he ate before falling asleep. At home he was listless and wanted to watch TV.

He started sweating at night and his pillow case was often wet in the morning – I thought nothing of it, as we were having a mild September. I turned his pillow over. He had a few nose bleeds in the night too, blood about the size of a fifty pence piece lying crimson on his pillowcase. Again I thought nothing of it; Joseph had suffered with nose bleeds as a child. I just stripped the pillow case and washed it.

A friend commented one afternoon at the school gate, when Andrew was fast asleep in the pushchair, that he was looking pale. Yes, I replied, he had been very tired recently and was probably sickening for something.

On Saturday 29th September 2012 Andrew woke up and was sick in the middle of the night. On Sunday 30th September we went to Coolings Nature Trail in Knockholt for some fresh air with my brother and his family. It was a lovely place with a short walk in the woods to look at some animals: a perfect outing for little legs. Andrew was still very tired. I hadn’t taken the pushchair, as the ground was uneven, and I refused to carry Andrew, thinking he was being a lazy three-year-old. After all, everyone else was skipping and running about. He had to walk, I told him, otherwise he couldn’t have a piece of cake in the café. My brother was a softer touch and picked him up. Andrew instantly fell asleep on his shoulder.

When Andrew developed a high temperature on Monday 1st October I wasn’t surprised; he had been sickening for something. Here begins my Facebook diary of what happened next:

Monday, 1st October 2012

Cath – It was nice to see you and Laila at music class this morning – but antibac your phone, Andrew has a temp of 38.2!

Tuesday, 2nd October 2012

I am with Andrew in A&E at Queen Mary’s Hospital, Sidcup.

Wednesday, 3rd October 2012

Andrew was diagnosed with leukaemia today. Curable. Such a brave boy.

Thanks to everyone for your kind messages, offers of help and support. We are moving to our new home at the Royal Marsden tomorrow where the chemotherapy will begin... I am finding it very hard to talk about, but it is much easier to converse in texts and emails.

Friday, 5th October 2012

Andrew and I are on the way to the Royal Marsden in Sutton and we are excited to have a ride in an ambulance.

The move to the Royal Marsden has been great. We have a private room, with facilities and professionals on every level. The Oak Centre for Children and Young people is an entire section of the hospital reserved for paediatric oncology. It was opened by Prince William a year ago, in September 2011. When we arrived Andrew was wheeled past a pool table, a juke box, a playroom, a school room. Everyone was welcoming and smiley. Once settled, we were given a tour of the facilities: there is a room with Miele washing machines and tumble driers; a parent’s kitchen that provides tea, coffee, milk, bread, butter and jam every day for free, and I have paid the deposit to rent a small space in a huge fridge. The contrast to the facilities at the Queen Elizabeth, which is in administration, is stark.

Andrew is settled in an isolation room in case a spot on his tummy is chicken pox, (which would compromise everyone else here), but he is happy with the IPad, toys, DVDs, and magazines, and with Mummy and Daddy. We have our own bathroom and the green sofa doubles as a parent bed. Andrew is most excited about having a TV on the wall in his room.

The Doctor managed to get a cannula into his left arm after some numbing cream and several attempts. He has strapped it up really well with used plastic saline packets and bandages to protect it, so hopefully it will last. Nothing is being done until Tuesday when Andrew will have a bone marrow aspirate procedure, lumbar puncture and a portacath line fitted in his chest for the bloods and medicines.

Clara is coping well in the circumstances. We continue to be overwhelmed by the outpouring of love through texts, emails, cards and presents.

Saturday, 6th October 2012

There is no phone service in the leaded hospital, but there is Wi-Fi, which means we have internet and Facebook. I love reading what everyone else is up to. I have left a bag of library books needing to be returned on my windowsill if anyone is going past in the next few days. Andrew is asleep now but he is about to have a blood transfusion as his platelets are low. We have been told he could have an allergic reaction so I am hoping he doesn’t. Otherwise everything is calm. The grandparents and Clara visited today.

Sunday, 7th October 2012

Joseph and I are at a Pub in Sutton. We are having a quick roast buffet lunch and much needed time to talk, thanks to both sets of grandparents. One set are in hospital with Andrew and the other at home with Clara. Joseph and I haven’t spoken face to face to each other for more than five minutes since Andrew’s diagnosis.

If we are both in hospital, we do not have time to talk as both the children demand our attention. We cannot talk in the evening as there is no phone signal in the room and we don’t want to leave Andrew on his own. We have decided to try and Skype later tonight.

At home I used the book ‘See Inside Your Body’ by Usborne Books to explain about Andrew’s poorly blood to Clara. There is a great page which explains about red blood cells, platelets and white bloods cells. It was very emotional explaining it all to Clara. I am not sure how much she understood.

Monday, 8th October 2012

I am back at the Royal Marsden with Andrew for my forty-eight-hour shift. Joseph has started writing down the key information from the doctors and nurses in a book, as the extreme tiredness makes it hard to remember what to say to each other when we swap shifts. The nurses are preparing Andrew for all the procedures tomorrow afternoon with a blood transfusion now. His saline fluid levels have been increased to flush out the high levels of phosphates found, so hourly trips to the loo are needed; otherwise all is ‘normal’.

I found dropping Clara off to school upsetting this morning, especially when everyone was asking me about Andrew and how we are doing, so I am sorry if I ignored you whilst rushing home again. It is important for me to try and pretend everything is okay for the ten minutes needed to have Clara go in to school happily. Please feel free to email me or catch up on here about how we are doing and then hopefully I won’t end up crying in the playground.

I stopped at Toys R Us on the way to the Royal Marsden to get a Batman for the Batcave here, the consultant told us not to spoil him, but it is very hard not to. You cannot ring or text me again but please keep in contact via Facebook.

Joseph and I managed to Skype each other tonight once both children were asleep. I talked softly so as not to wake Andrew, and plugged headphones in so I could hear Joseph. We found ourselves giggling at one point which felt so wrong but so right too.

Tuesday, 9th October 2012

It is nice to be home – it has been a tough day. Frequent loo trips and restless legs meant Andrew didn’t sleep too well last night. He had a hearty breakfast but was Nil by Mouth after 8:15am, as we were due to go for his general anaesthetic at 2:30pm. He was going to be given the ‘special sleep juice’ through his cannula, but the cannula failed at about 1pm. The doctors removed it. They tried to reinsert another cannula for the hour or two before his op, but Andrew screamed, shouted and protested so much they couldn’t. Thankfully they gave up and took him to the operation room anyway at 4pm. It was very distressing and I ended up in tears. Even one of the nurses left the room with tears in her eyes.

Andrew was amazing. In pre-op he drank the ‘happy medicine,’ which relaxed him. He then had the sleepy gas, through a mask, whilst playing a Toca Boca app on the registrar’s IPhone. Joseph and I sat on a green chesterfield sofa outside the operation theatre, waiting. The operation was a success. Bone marrow aspirate, lumbar puncture and line are all done. Andrew was having such a lovely deep sleep he did not want to wake up. The great news is that the dermatologist said his skin lesion is not chicken pox or contagious and needs no further treatment other than moisturiser. As a result, we are now out of isolation, which means Andrew can leave the isolation room and have access to the playroom tomorrow.

Late tomorrow we will find out which type of leukaemia this is.

There is another family here who were diagnosed on the same day as us last week. I spoke to the mother yesterday and she asked me if I was able to eat. I said yes and she said she wasn’t. She had been to the canteen once but told me it was too expensive. In that moment I realised what a wonderful support network we have because I have portioned home-cooked food in my freezer thanks to my neighbour and the constant texts, emails and gifts we receive at the hospital brighten our days no end.

Chapter 2

Regimen A – Induction

Red blood, yellow night

Blue hospital, white chemo

All Beads of courage

Wednesday, 10th October 2012

Andrew has the commonest and most treatable leukaemia called acute lymphoblastic leukaemia or ALL. The onset is rapid. There is no known cause. I am trying to remember how long he has been symptomatic for. It makes me feel sick to think he has had cancer and I didn’t know. I feel so guilty for thinking he was being lazy, but we are eternally grateful to our GP, Dr Navarro, for realising something was wrong and sending us for a blood test straight away. I rang her today to let her know and asked if she had suspected it was leukaemia. She admitted she hadn’t suspected it but had known a blood test would show why he was pale and anaemic. Ridiculous to admit it, but I was so relieved when they told us it was leukaemia and not a tumour in his tummy under the spot. They told us not to google the disease as there are a lot of crazy stories and incorrect information on the internet. They have given us print outs from the Macmillan website which is the best and most informative: http://www.macmillan.org.uk/information-and-support/leukaemia/acute-lymphoblastic-all

It was lovely to see Cath this morning. We stood on the pavement outside the house talking. She had been to Primark to pick up some larger size t-shirts for Andrew and was dropping them off. I had taken Clara to school and was then going on to the Royal Marsden. It felt utterly normal to be a Mummy stood on a street corner chatting. Cath is the first person I have spoken in detail to, other than family, since the diagnosis and it was wonderful.

Andrew had a good day as days go. He LOVED the playroom so we played there twice; the Giggle Clowns were there once entertaining the children with squeaky knees and red foam noses: http://uk.theodora.org/en-gb. The playroom has one of those full size rocking horses which Andrew loves to sit on and ride. There is a craft table where he can stick, cut and glue to his heart’s content, and another table with moon sand, which is more hygienic than normal sand. The room is well looked after and there are some lovely toys including a wooden hospital and a train set. Since the playroom is opposite the parent’s kitchen I can leave Andrew for a moment to refuel on free, strong, milky coffee. He is constantly attached to a fluid drip at the moment, so I have to wheel him around with a stand and plug him in. He likes to stand on the blue metal frame and be wheeled down the corridor. There are lots of plugs in the playroom, so wherever he moves to I can find a plug socket. It is very well designed. He gets into a tangle every now and again with the long Mr Wiggly and has to twist around a few times to free himself.

We are following a protocol called Regimen A using the 2011 ALL guidelines. Tomorrow is ‘Day One’ of Andrew’s treatment, called the Induction Stage, which starts with Dexamethasone (Dex) or steroids; we begin chemotherapy on Day Two.

The steroids will turn him into an emotional little monster apparently. He will have a horrid jab in the leg on Day Four, another general anaesthetic and lumbar puncture on Day Eight and then hopefully he will be home on Day Nine, (next Friday). There was some concern over the possibility of enlarged kidneys; however, Andrew had an ultrasound which showed his kidneys were normal and not enlarged, which is a relief.

The possibility of the leukaemia being in his spinal fluid is less than 1 (this is good). Andrew has learnt to wee in a pot rather than a bed pan, which will make things much easier, especially as Andrew is still being flushed though with fluids. Every time he wees, which is frequently due to the hyper-hydration, I have to come out of the isolation room and take the potty to the sluice room. Here a nurse weighs what he has produced and records it. I then have to wash and sterilise my hands before going back into the isolation room.

The room is cleaned twice a day and the cleaner keeps telling me how much she loves Andrew’s hair. I have been thinking, but not saying, how insensitive a comment that is as his hair is surely going to be falling out soon. I don’t want to be reminded of how gorgeous his blonde curly locks are; I know they are scrumptious and I don’t know what I am going to do or how I am going to feel once they go.

Finally, the ladies in the playroom said we can keep the Imaginext Batcave, as Granddad fixed it and I bought a Batman - they even found a Robin! We have been told going back to school is a possibility for Andrew after four months, but that seems an age away. I cannot believe it has only been a week since we were told Andrew had cancer. It feels so much longer than seven days.

Thursday, October 11th 2012

I didn’t go to work today as I have been in hospital with Andrew. The four of us are all together at the hospital. It is very overwhelming having to listen to two children at once. We have had a relaxed day: lots of playing, TV (the Hong Kong Phooey DVD is a BIG hit) and eating. Clara kept wanting to be near Andrew but, in doing so, she tripped over Mr wiggly and, on one occasion, we feared she was going to pull it out.

Andrew started his liquid oral steroids today and has thrown them up twice. This is particularly stressful and difficult because we have to make him take them again. We are trying small amounts of medicine with loads of ice-cream and Maltesers: anything to disguise the taste. He has to take them twice a day for the next twenty-seven days. We managed one dose eventually, in three stages of about seven millilitres at a time, followed by mouthfuls of Maltesers and ice cream. There were still huge shudders but he was not sick.

I will be dropping off Clara in the morning and then going to work. I cannot believe I have had five years at home and then three weeks into a new job this happens.

Friday, October 12th 2012

Last night that we met our Clic Sargent social worker who said the charity will give us a grant of £170. http://www.clicsargent.org.uk We can use this for anything we like, but it will more than cover a year’s parking at the Royal Marsden. We are now eligible for Disability Benefit for Andrew which means about £74 a week. Again the money will help with travelling costs. Silver linings on a very black cloud. He suggested I don’t think about shaving off my hair for charity; I told him I wasn’t even thinking about it!

The Clic Sargent social worker gave us two copies of a book called ‘Joe has Leukaemia’, written from a child’s point of view. We won’t share it with Andrew yet but it has been a